My quantified and qualified self

I started writing this post a few days ago, but never found the time to finish it. Today is a day off of doctors appointments, although I am expecting a call from the oncologist (onc) at PAMF regarding the results the tumor board there.

Let me start by saying I’m a mixed-methods researcher. That is, that when I do research, I look at both qualitative and quantitative data, as both help to provided a complete picture. With this blog, I have mostly been dealing with what I call my qualified self – that is my feeling and my perceptions of the world. When I think about my quantified self, I’m thinking about the numbers – what’s my current weight, what are the letters that represent my diagnosis, what are my various counts, etc.

The increase of mobile and now wearable technology has spawned a whole movement known as the quantified self. Scott actually attended a meet-up with people regarding the quantified self. For a few years now, we have been quantifying ourselves by having a scale that connects via wifi to the Internet and reports our weight and body fat measures. This information is nicely graphed for us. One thing this has provided is a clear picture of when I started to lose weight – June 2nd. Without the automatically measuring scale, I would not have been able to so clearly see the progression.

June 1st was the first time I notice that something wasn’t the same with my left breast. I panicked a little at first, but then told myself it was nothing – of no concern. I convinced myself for a full week that it was nothing. Then on June 9th I went to see my family doctors … and that is when my life began to change.

Another area where I measure my quantified self is when I bike. I mostly like to track time rather than distance, because really, it is the length of time on the bike that matters most. For this I use an app on my phone called Runkeeper. One advantage to tracking my quantified self is that it provides me with motivation. When I started to write this post, I wanted to report on my bike ride, but I had not done one that day. That gave me the motivation I needed to get out, when I wasn’t really feeling like it – I had the strength, just wasn’t in the mood. Of course, once I got out on the bike I was very glad to be out riding.

Today, I don’t have any appointments (at least not right now). I’m going to try another attempt at Mount Hamilton from the Fire Station. Last time I tried it I rode 15 km (exactly half was up hill). That was June 10 – the day after the appointment with my primary care doctor, and two days before diagnosis. Today, I’m going to try the same ride, with my folding bike (I find it a little easier to climb on my foldy – plus my road bike is in the shop for a service). It takes about an hour to drive up to the fire station. One really nice thing about this ride is that there is very little traffic during the week. I usually get passed by two or three cars in the hour and half that I’m riding … although I suspect today might be a two hour ride – I’m going to try to make it …

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When I go to the doctors, I see mostly my quantified self. I am the numbers that are represented by the pathology. However, the doctors actually don’t seem to see me that way. In many ways, they actually seem to be more about the qualified self – they are asking me to make decisions based upon how I feel and what is right for me. They aren’t focusing on the quantified self – at least not yet – now, if I end up in a clinical trial, I expect that will become much more quantified!

This whole clinical trial thing is interesting. There is so much research going on around breast cancer treatments, that there is guaranteed to be one aspect or another of my treatment that is associated with some trial or another (my surgeon wants to add a tattoo to my nodes if they don’t have cancer). In some ways, I don’t want to be in too much of a trial, as that limits things. For example, if I’m on a chemo regime as a part of a clinical trial, then all my tests and such need to be done at Stanford. I cannot get a portion of my care at the closer PAMF. If I’m not in a trial, then I could, for example, go to PAFM for radiology – which is nice, because the one thing I did like them most at PAFM is their radiology department. Potentially, I could go to PAFM for chemo treatments – even though the onc is at Stanford. It is good to know that the option is there.

And now I need to make breakfast … fuel for the bike ride later today.

  • Becky

One Comment

  • Clinical trials sound like more control imposed on you than you might be comfortable with Rebecca? With my heart I was in a university hospital both times and agreed to be a kind of display and practice patient as much as I could. Both times I’d gone in very late and my heart was barely functional (described as “exploded” the second time). I wasn’t really a clinical case, just a disaster.

    That said, the attention broke the ruminating and absorption in myself the first time. For some reason I felt in control and responsible and argued with interns if I thought they were being too neutral or “protecting” me from hard news. Second time I was irrational, held at the mercy of my failed body. Though it was absurd to fret over control after shutting down completely in the holding area, my brain did take over each time I was revived but where it thought I was? Don’t know.

    “Control” is a distant concept when you feel like you are under attack by illness. But conscious participation matters. This blog is a positive thing you are doing. I take you to be a strong participant in your own fate and can’t really advise beyond staying fully attentive as this stuff swirls around you.

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